Media Resources
We’ve compiled resources for members of the media to quickly orient you to Aicardi-Goutieres Syndrome (AGS) and our organization’s mission, priorities, and some of the current challenges we are facing as a global community.
For press inquiries or requests for additional information, please contact Devon Cordova at devon.cordova@agsaa.org. We look forward to sharing our stories with you to both increase awareness and create opportunities for progress.
About Aicardi-Goutieres Syndrome and the AGSAA
A general background of Aicardi-Goutieres Syndrome (AGS) and the Aicardi Goutieres Syndrome Advocacy Association's mission.
Cost and Access Issues and Solutions for JAK Inhibition in AGS
A background and fact sheet about cost and accessibility issues with baricitinib, the one and only proven treatment for children and adults living with Aicardi-Goutieres Syndrome.
Family Testimonials: JAK Inhibition Access Issues and Treatment Experience
A sample collection of testimonials from families around the world living with AGS who have been struggling to fairly and equitably access JAK Inhibitors in a timely manner, as well as testimonials from families who have seen life-changing benefits and significant improvements in health and development when given the opportunity to begin JAKi treatment like baricitinib.